Baby Steps

Sunday, November 17, 2013

A father's perspective

Justin wrote this and I couldn't have said it better....

It’s a Friday night at 10 o’oclock and I just got out of
bed, unable to sleep due to another episode that disturbs the calmness of an
unfamiliar apartment in a new city. The lack of sparkle in her eyes as she
enters yet another cluster of spasms tears the peaceful slumber away from my
child. Hour after hour, waiting for the next one to come. Counting. Tracking.
Watching. There is nothing we can do. They come at all hours of the day.
Without warning. Everything is dropped to helplessly watch. Is she still
breathing? Does she need emergency medication? When will it stop?

Everyone tells you that having a kid will change your life.
I don’t think this is what they meant.

For the past two years, my wife and I have watched our first
born seize uncontrollably every single day. Piper was born with a rare genetic
condition, Aicardi Syndrome, which resulted in the corpus callosum to never
develop and an intractable form of epilepsy called Infantile Spasms. Since the
age of three months, she has seized every day. This is definitely not what I
expected fatherhood to be. But, I have learned some truisms in these past two
years. I have learned what unconditional love really is. I have learned that an
education bought at an elite school of medicine does not lead to supreme
knowledge. I have learned that you can only rely on yourself and the wise
people around you.

Over the past two years, my wife and I have battled for our
daughter. Every stone has been turned. 17 doctors, 9 anti-epilepsy drugs, 1 severe
diet, 6 supplements, 50,000+ seizures, 1,300 miles, thousands of friends, 1
last doctor prescribed drug that could lead to liver failure. We have learned
to live by numbers. Numbers that have altered our perspective on parenthood.
Numbers that bring a community together for a controversy.

On August 1, 2013, my wife and daughter entered the state of
Colorado. We have moved away from those thousands of friends to join a new
controversial community. A community that has become addicted to marijuana. We
have moved to Colorado to take part in a movement of parents of epileptic
children who are trying cannabis as a last ditch effort to heal their children.

Marijuana. The word has carries some weight that will not
set easy with many of you. Trust me, it was not an easy decision. I too once
believed that medical marijuana was a smokescreen for people to use the drug
recreationally. Not too long ago, my mind was changed. I learned of a 5 year
old girl named Charlotte Figi. Charlotte has Dravet Syndrome, another form of
intractable epilepsy. Charlotte’s parents were in a similar situation as us and
were at the end of pharmaceutical treatment. Charlotte’s parents then found a
group of brothers growing a strain of marijuana with low THC (the only psychoactive
compound in the plant) and high CBD (cannabidiol, another compound in the
plant). They had nothing to lose. Guess what…it worked. The first dose,
Charlotte went a week without a seizure. As a frame of reference, she had 300
the week before.

Hope.

She’s not the only one. Now hundreds of parents, including
many from Tennessee, are moving their children across the country to get access
to the now named Charlotte’s Web. There’s been some media. Perhaps you’ve
heard. Guess what…it’s working for a lot
of kids.

To give you an idea of our expectations, we do not think it
will work. But, we don’t think anything will work at this point. Another truism,
skepticism. We have accepted that this is our daughter and she has influenced
more lives in two years than I have in my 28. She has a purpose, to teach.

Piper started on Charlotte’s Web on October 24th.
We give three doses per day in an oil form. For three weeks we have been
increasing the dose. It’s never easy.

This week, we have had two newspaper articles and two local
news channels report on our journey. Through social media, I have read 600+
comments on these reports and come across 3 dissenters. I don’t know what is
coming next, but if you are still reading, I ask for you to remove your
assumptions, your fears, and the unknown and ask yourself why.

These past three weeks, we have seen bad days, like today,
but we have seen some of the best days. Compared to one of the worst days, Valentine’s
Day 2012 – 379 spasms. Three days this week she has had 2-3 spasms. Can we say
it is attributed to cannabis? I’m optimistic, but it’s not where I want to be –
zero

I don’t know where our journey will take us, but I hope that
Piper has fulfilled her purpose and taught you to examine the possibility. I
don’t know that we will ever be able to come

2 comments:

As always, Justin & Annie, we support you 100%. When it comes to Piper, it doesn't matter what anyone else says, you do what you have to for your beautiful daughter. She is an amazing little girl, and I'm so proud of you two as parents. You are better parents than I could ever hope to be. So honored to call you friends.

About Me

We have a beautiful baby girl who has a rare genetic disorder called Aicardi syndrome. She was diagnosed at 6 months and we are learning how to live a life we never expected. We have already learned so much and want to share our story with you.